If you haven’t read Part 1 go do it now and then follow the link back here.
You read about the extraordinary response to our severe kids going across the stage at graduation. As with other students, many tears were shed by parents. However, the tears shed differed from the parents of my kids, compared to the parents of more typical students.
Remember; graduation is not an end but a beginning. But the beginning of what? For typical kids, the beginning of college, technical schooling, military careers and jobs. But what about the kids with severe disabilities? I get this all the time; What happens to your kids after they graduate?
The post-school transition for students graduating from special education programs, in general, is hideous. EBD, LD and MR students seem to suffer great impoverishment when it comes to post-school life. They are the last to get hired, and only for the most menial of jobs. And those are the lucky ones. Some of them will spend many of their post-school years in the judicial system, in and out of jail.
For the severe kids, none of the above apply. They are not going to be able to get and hold cempetetive employment. Most need extensive support just to live a normal life with feeding and toileting.
For the past 22, a graduate has been taken care of at public expense and with the protection and provision of the various educational laws. First through the early intervention program and then through the public schools. Parents spend the better part of 15 years battling and fighting and begging and negotiating and advocating for their child’s educational needs. Sometimes they get a bit and sometimes don’t get what they want. But the struggle and fight seems to never end. Many bring in their advocates and lawyers, persuading the schools to follow the law and provide needed services. Winning such a battle brings some satisfaction for a parent. But the day quickly approaches until it is right there; Graduation Day.
Graduation is the end of the line for the educational system. That’s it. No more teachers, administrators or special education buses. No advocates. No special education law. No IEPs. No IDEA. Finished.
If that was it, those tears from our parents might be tears of relief for not having to fight the system anymore. But they are not. What is waiting for my kids outside of school is a dark abyss. Cold, uncaring and bottomless. The laws protecting and guaranteeing the rights of these kids end. There are no laws that state that anyone has to takes these young adults in. Well, that’s not quite true. Someone has to take them in. If not family members, than the state can take custody in a group home. But the burden falls on the people who have been doing this for the past 22 years which is usually the parents. Only now, there is no school system to either cooperate with or fight.
There are some services out there. The moderates graduates have a shot at maybe getting some vocational rehab services. But voc rehab favors the higher level kids. The severe kids MIGHT be able to get into a sheltered workshop…after being on the waiting list for several years.
For Niles, whose story was in Part 1, post-school transition meant staying at home with his father. And sitting around. All. Day. Long. For 3 long years, Niles sat at home until the sheltered workshop either had an opening or got some additional funding. Niles was fairly lucky because Queen kept tabs on him and kept feeding Niles’ father what information she could get to him. But his father, while sometimes loud was not particularly contentious. He was able to get close to some folks who could hang with him beyond school time.
Did I hang with Niles beyond school? No. And I don’t support parents substantially once they leave us because I use every spare moment to support the new kids on my caseload. For the old ones, they are on their own, more or less.
I am, for all practical purposes, the undertaker. I have very little to offer these kids beyond what I’ve already given them in the way of independent skills. I’m working more and harder on the interagency transition council to get some things, but it all comes down to money.
IDEA is a mandate, albeit with limited funding, that does have the threat of due process hearings and expenses to schools. Outside of IDEA and school, there is no legal mandate to supply productive activities. No one has to take our kids if they don’t want them. This is why I’m all over aggressive behaviors, because no sheltered workshop or home will accept a kid who is going to beat on staff and other students.
Those tears shed by Niles’ parents were the tears of someone who was going from bearing a heavy burden alongside the school system to having to carry the entire burden alone. The school is no longer a partner. The bus is not going to pick them up, the school is not going to feed them, change their diapers, wipe their noses or do their catheterizations anymore. Even if the school was an unwilling partner, the world on the outside is far, far more hostile.
In the world of welfare and public assistance, the turnover rate is higher than it is for special education teachers! Chances are pretty slim that a family will have the same case or social worker for more than a year or two. Also, I have seen entire regional boards upended, moved, turned over, reorganized and relocated almost every year. Services are most often scheduled and assigned on a regional or state level which is far less responsive than a local school district. Everytime a shift or change is made, funding is interrupted and services are effected. Service board directors do not answer their phones and even more rarely will they return a call. And you can not sue them. As a parent, the best leverage you have are your local state representatives…politicians. You literally have to throw yourself upon the steps of your state capital and beg for funding.
Those trying to get medicaid waivers for their younger children in Georgia have some idea as to what I’m talking about. It’s why I’m having to take extra summer work to pay for dental care for my oldest son. We’re trying to lobby for some sort of coverage that is reasonable, even with a monthly premium, because our regular insurance will not do it. Fighting congress, even on the state level, is harder than dealing with a teacher, a principal or a local school board. But this is what a parent of a student with severe disabilities faces on graduation day. It is not really a happy occasion at all. The tears shed that day are more like a funeral than a wedding. Which is why I often feel like the undertaker at these things, trying to console a family that faces such an uncertain future. Niles did eventually get into a sheltered workshop, after being on the waiting list almost 3 years. Fortunately his dad isn’t the sort to move, because if he did, he would face these hurdles all over again. So what can families do?
-Preparation starts well before graduation day. In fact, as soon as they enter the public school system, begin thinking about graduation day. 20 years seems like a long way off, but it that day will come.
-When planning educational programs, emphasize daily living skills; potty training, dressing, eating and eventually being able to move around and take care of themselves independently.
– Communication skills also need priority. Using strategies like Pivotal Response Treatment and AAC, purposeful communication can become a reality. This means making the person ask for what they want instead of anticipating their needs.
– Consider what happens to them if you (as a parent) are not there, or become disabled, yourself. This is scary for any parent, but this needs to be driving you a bit as the child moves through the system.
– Look into wills, trusts and guardianship issues. Probably the scariest stuff at all, and all of us parents put it off. Regular parents don’t have wills, and parents of students with disabilities are not any better about this. But at least look into it. Find some parents who have already done it, which leads to…
– Get support from other parents who have gone before. They will be invaluable because once the school system is behind you, don’t expect much help from them. Schools have new students to worry about, and in growing numbers. Hooking up with other parents will give you more accurate information about the system.
– At the same time, be available to other parents following you through the system. It makes your own experiences so much more meaningful if others can benefit from your struggles.
– Keep your faith.
Graduation Day is often a rich mix of all sorts of feelings and emotions. Preparing while the student is in preschool can make it a bit less chaotic. Teachers need to be mindful of Graduation Day, as well. While those teachers in elementary and middle school are able to just shuffle off the kids from one grade to another, those of us at high school are the end of the line. The only time I see any of these teachers at a graduation is when their own kids are getting a diploma and getting ready for college. My students are probably not going to see their 2nd grade teachers ever again after elementary school. Many won’t be able to go up to them and say “Thank you for being my teacher!” But I think it would be very useful for the teachers in earlier grades to attend a graduation every other year or so and watch their kids, meet the families again and show a bit of support. Afterall, graduation represents a collective effort of dozens of people over the years.